Wednesday, November 10, 2010

Can somebody shut her up?

A couple of weeks ago I referred to the moment when I found my voice as a parent and advocate for Maggie.  A couple of people asked when that was. I could have sworn I already told this story, but I looked through my archives and did not see it. My “filing” system is terrible, though, and I may have missed it. If this is a repeat, I apologize.

Maggie spent the first three months of her life in the hospital and then was in and out most of the next two years.  I was at her side every possible moment and did not realize how much I was absorbing and learning about medicine and Maggie.  Sometime during that first summer, when Maggie was about 5 months old, we took all three kids to Lake Tahoe. My parents had a place up there and it was a relatively easy vacation.

Maggie has always had a feeding tube. Today it is a “button” to which I attach the tube when she needs to eat.  Then, however, it was just a long tube. Of all the things going on with her, this was the least dramatic. Her respiratory and other issues were more pressing.  Accordingly, I received very little instruction regarding this tube, had no idea that it could fall out and did not have any replacement. Of course, it fell out while we were in Tahoe.  I did know that you had to get something in there immediately or the hole would start to close and she would have to undergo another surgery to reopen it.

 My parents were out to dinner so we just packed the three kids into the car and drove 7 miles to the urgent care center in Tahoe City, a town of about 2,000 people. Believe it or not, Tahoe City is not known for innovative medical care. The doctor took one look and said we had to go to the ER in Truckee, a town of perhaps 10,000, another 14 miles away. Off we went.

Needless to say, the Truckee hospital did not get too many feeding tube issues either. They wanted to send us to Reno about 45 minutes to the east or to Sacramento about 100 miles west. That was ridiculous. I did not know much about the tube, but I just knew in my heart that it did not warrant any more car trips or any more delay. I said, “No. This is easy and we can do it here.” The doctor looked at me as if I was crazy. I said just stick a tube in there, anything; we have to keep the hole opened. He was clearly not comfortable with that at all.

I gave him Dr. DeLorimier’s phone number. Dr. DeLorimier was a world-class surgeon who had already operated on Maggie 5 or 6 times in the few months she had been on earth. The kind Truckee doctor said, “Wow, he’s famous.” I said, “Yes, he is. Please call him.”  By the grace of God, Dr. DeLorimier was on call that night and talked to the Truckee doc. When the doctor came back into the room, he looked perplexed.

“What did he say?” I asked politely.

The doctor looked me in the eye and said, “He said to do whatever you say.”

I (smiled to myself and) said, “Good, let’s get to work.”     

That was the moment. I just KNEW this was not that big of a deal and having this famous surgeon back me up to another doctor was the icing on the cake.  I trusted my instincts and they paid off, and I have trusted them ever since. I found my voice and have not shut up since. .

Just to finish the story - In five minutes, Maggie had a new tube. The doctor, now fascinated with her story, was asking all sorts of questions like “what else is wrong with her?”

All this time Steve had been entertaining the boys who were 4 and 6 years old.  They went for Ice cream and got toys to keep them entertained in the waiting room. When Maggie and I were finished, Steve was reading a real estate magazine because it was the only thing available.  Steve, who had no idea what had gone on in the exam room, said, "Did you know you can buy a 4 bedroom, 3 bath house here for $160,000?"*  I just looked at him and said, "Unless you want to buy me a helicopter to get Maggie back and forth to UCSF, I am NOT moving here."

*remember this is 16 years ago. Couldn’t do that now. Wish I’d listened to him then…

I forgot my thankfuls yesterday.
November 8, thankful for my brother Pat, who has a birthday today. He always makes me laugh.
November 9.  Thankful for a clear crisp morning, and a beautiful walk on ocean beach with a friend and our dogs.
Today, thankful for Irish pubs, which are the same everywhere, and for making arrangements to host Eddie’s graduation party at one in Reno.


  1. This is a great story and I can totally picture it. Funny hearing some of those names again after so long. Terrific catching up. :)

  2. What a great story. I will retell it over and over, I'm sure...

  3. Definitely a story worth re-telling! By your thankfulness, you have your priorities straight!


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